August 10th–Aspen Daily News Front Page!

From left: Leah Potts, Amanda Boxtel and Kasie Burtard pose as “Michael’s Angels,” in reference to the help that Aspen Club co-owner Michael Fox has given them so far in their fundraising efforts. The three are local residents who have traveled to India to receive human embryonic stem cell injections in the hopes of regaining mobility.

They half-jokingly call themselves “Michael’s Angels” — after Michael Fox, co-owner of the Aspen Club, who has opened the Club’s doors to help Amanda Boxtel, Kasie Burtard and Leah Potts in their fundraising efforts.

It’s an apt comparison to TV’s famous female trio. The local women are every bit as tough as they are feminine, full of spunk and passion. But instead of battling bad guys with guns, they’re fighting their way out of the wheelchairs and walking aids that have limited their movements for a combined 30-plus years, with human embryonic stem cells.

And it seems to be working.

The women’s challenges, however, are today almost more financial than physical. All three have experienced marked physical improvements since starting embryonic stem cell treatment at Dr. Geeta Shroff’s clinic in India. But with multiple trips costing tens of thousands of dollars each (not to mention time off work and zero insurance coverage), fundraising has become as much of a key focus as everything else Boxtel, Burtard and Potts are doing to be able to walk again.

“This treatment is not available anywhere else in the world, and I see it as being injected with the divine gift of life,” said Boxtel, trying to summarize the complex process.

This Tuesday, the Aspen Club is once again hosting an evening of awareness for “Michael’s Angels.” From 5-8 p.m., everyone is invited for live music, free food and drinks, and the opportunity to find out more about their unique experiences. There’s no ticket price but donations are of course encouraged and appreciated.

Progress

Most valley residents are by now familiar with the story of Boxtel, co-founder of local nonprofit Challenge Aspen, who has been confined to a wheelchair since a skiing accident rendered her a paraplegic more than 16 years ago.

Last year, Boxtel became the first American woman to ever receive human embryonic stem cell treatment, and her experience — told on her Web site, via an e-mail blog and in a forthcoming book — has drawn intense curiosity and numerous inquiries from others with similar injuries.

Two of those people are Burtard and Potts, who followed Boxtel’s blog and were taken under her wing as she explained and encouraged Dr. Shroff’s pioneering work. An end-of-the-year fundraiser at the Aspen Club last December raised $33,000 for each of the three women to either begin or continue human embryonic stem cell treatment in India.

“Knowing Amanda did it and had huge success really helped,” Burtard said at the time. “I’m so blessed that Amanda is in our valley and introduced it, because otherwise it probably would be five more years before I could convince my family to let me try it.”

Illegal in the United States, human embryonic stem cell treatment was pioneered by Dr. Shroff, who developed a single embryo in a lab from which she created multiple stem cell lines. The treatment has been used on a number of disorders, including terminal ones, and in the last two years 72 patients with complete spinal cord injuries have seen an average 63 percent improvement, said Boxtel. That level of improvement, she said, is astounding because most of these people were given no hope of even 1 percent improvement in their lifetimes.

In her own blog, Boxtel says her body has changed “miraculously” since her first stem cell injection in June 2007. She writes of wiggling toes, feeling her leg muscles and wearing a dress for the first time in 16 years while “standing proud” in leg braces.

“My legs are continuing to get stronger and my body is coming alive,” she wrote on July 24, and earlier this week she proudly showed off her ankles, which used to be in a permanent state of swollenness.

Boxtel, who lives in Basalt and is a professional speaker and coach, has made three trips to India so far for embryonic stem cell treatment, part of a three-year plan that involves going back every four to five months for one month at a time. The fourth trip is booked and planned for Oct. 23-Nov. 26 — though she still needs to raise money for the $15,000 stay — and her budget for next year, she figures, is $78,000 for three treatments.

Boxtel has made it her mission to tout the treatment she so fervently believes is “life giving life.” She points to Burtard, who after her initial session in India can stand without leg braces by locking her knees.

Burtard, 26, is the youngest of the three women. A valley native and 2000 graduate of Roaring Fork High School, Burtard was in a serious car accident in 2002 that left her paralyzed from the waist down. Burtard is no stranger to traveling for treatment — for two years she traveled to Texas almost every other month for physical therapy — but India was a whole new ball game.

Comparing notes on treatments, Burtard said she hardly felt anything from a procedure that caused some pain in Boxtel and Potts. She giggles about her ability to eat fast food while the others expressed concern about their diets in India (especially since healthy food is a component of getting better). And she seems to be taking in stride her life being turned upside down again — while in India her landlord sold her apartment and she was homeless for one-and-a-half months.

But Burtard was the first to agree that such a drawn out course of treatment can try a person’s patience. Embryonic stem cells, like babies, take time to gestate, and while as many as half will die off, the others need time (about five years, it is believed) to fully integrate themselves into the body and cause the desired changes.

“When I was in India I wasn’t impatient, just frustrated that it wasn’t getting any better,” she said. “But I know it’s not going to get any better unless I try really hard.”

Burtard, who now lives in Silt and works as a nanny, is planning to go back to India in September.

Potts, who came back from her first three-month treatment just three weeks ago, joked that “by the end of it I felt half-Indian,” because of the sheer amount of time spent there and the fact that the 100 million stem cells a day she received as part of the treatment all come from one Indian embryo.

Potts, like Boxtel, was injured in a ski accident, but is a recovering quadriplegic who could walk with the aid of a cane — even before starting stem cell treatment she has defied her doctors’ expectations. But her body, which was changed so dramatically nearly 10 years ago, is coming back, she writes in her blog. Her posture is straighter; her balance is better; limbs and muscles are functioning more as they should; she has fewer spasms throughout her body; and she is completely off her pain medicine.

“I thought I would (see improvements), but it’s still hard to believe,” said Potts, who uses a recumbent bicycle to get around and exercise her legs at the same time. “It seems too good to be true, but it’s true not without dedication and sweat and tears.”

Potts, 32, lives in Aspen and works as a spinning instructor at the Aspen Athletic Club. (Known to many as Leah Rowland — Potts is changing her name because she’s getting divorced.) She is hoping to go back to India Oct. 27, depending on how fundraising efforts go.

On Wednesday, Boxtel, Burtard and Potts appeared on Jeannie Walla’s Channel 19 TV show, “Showcase Aspen,” and they retell their updated stories time and time again to friends and even strangers wherever they go. As far as being home versus being in India, there they were able to focus solely on themselves and their improbable journey. Here, they lead lives like most of us: having to work, cook, clean and walk their dogs — on top of raising more money and focus on an intensive six-day-a-week program of physical therapy, yoga, massage, standing in leg braces, and keeping on a healthy, nutritious diet. They’re gushingly grateful for the family, friends and therapists who help, often without compensation — and in particular for the caregivers who sacrifice so much to travel with them to India as required by the clinic.

And there’s a lot of crying and frustration, they say. But, as Potts puts it, “I choose to make this my lifestyle. This is what I do.”

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My History, My Story

On February 27, 1992 at the age of 24 I sustained a complete spinal cord injury at T11/12 (that is, no feeling or sensation at thoracic vertebra 11 & 12). I am able to recall the accident vividly in my mind's eye to this very day. I was downhill skiing. Everything happened in slow motion. A freak somersault and in a split second I shattered four vertebrae. It was as though somebody turned off a light switch. An electric current zapped through my legs and in an instant there was nothing.

15 1/2 Years with No Changes…

I have always been an active woman. For 15 1/2 years I sort out various alternative healing therapies yet I showed no improvement. Early on I tried standing tall in leg braces, but my efforts proved fruitless, plus I had a couple of horrible falls. Sitting simply became more functional. In August 2000 I was the recipient of the Vocare Bladder Implant, which helped me void my bladder using electrical stimulation. For 15 1/2 years I kept my legs supple and alive with various alternative healing therapies, yet I showed no improvement. I was paralyzed with no sensation or movement from the top of my pubic bone down. While I arrived at a place of acceptance with my paralysis, I have always had an uncanny insight that one magical day my legs would support me. Secretly, I never gave up hope.

HOPE Restored!

While my spinal cord injury took away my ability to walk, it didn't take away my ability to dream. TODAY I am turning my dream into my reality one baby step at a time.
On June 25, 2007 I was the first US Citizen to undergo Human Embryonic Stem Cell (hESC) Therapy with Dr. Geeta Shroff in Delhi, India.
During my initial two month visit, I not only witnessed astounding improvements in my own body, but with many patients who have life restored within their bodies and a newfound reason to not give up but LIVE!

New Sensations, New Muscle Power–I Am Defying the Odds!

I am compelled to share my experiences with the world. Since my first stem cell treatment in 2007, and after 15 1/2 years of being in a wheelchair I now have increased sensation with light touch and with deep sensation tingling all the way to my toes; my bladder and bowels are beginning to function again; and I have increased muscle power in my legs including gluteal muscles, quadriceps, hamstrings, adductors and abductors, and a flicker in my calf muscles too. Hope is now a part of my vocabulary!